ON THIS PAGE: You will read about your child’s medical care after treatment is finished and why this follow-up care is important. Use the menu to see other pages.
Care for children diagnosed with brain stem glioma does not end when active treatment has finished. Your child’s health care team will continue to check that the tumor has not come back, manage any side effects, and monitor your child’s overall health. This is called follow-up care. All children treated for brain stem glioma should have life-long, follow-up care.
Your child’s follow-up care may include regular physical examinations, medical tests, or both. Doctors want to keep track of your child’s recovery in the months and years ahead. Magnetic resonance imaging (MRI) scans done at regular intervals along with a history and physical examination are the best way to monitor if the tumor is stable or is trying to come back. In most patients, signs and symptoms often come before the changes seen on imaging tests. If you notice new symptoms in your child, contact your child's care team and request to schedule a clinic visit and an MRI scan.
Cancer rehabilitation may be recommended, and this could mean any of a wide range of services such as physical therapy, occupational therapy, family or individual counseling, nutritional planning, and/or educational assistance. The goal of rehabilitation is to help survivors and their families regain control over many aspects of their lives and remain as independent as possible. Learn more about cancer rehabilitation.
Learn more about the importance of follow-up care.
Watching for recurrence
One goal of follow-up care is to check for a recurrence, which means that the tumor has come back. A tumor recurs because small areas of tumor cells may remain undetected in the body. Over time, these cells may increase in number until they show up on test results or cause signs or symptoms.
During follow-up care, a doctor familiar with your child’s medical history can give you personalized information about the risk of recurrence. Your child's doctor will ask specific questions about your child’s health. Some children may have blood tests or imaging tests as part of regular follow-up care, but testing recommendations depend on several factors, including the type and grade of tumor first diagnosed and the types of treatment given.
The anticipation before having a follow-up test or waiting for test results can add stress to you or a family member. This is sometimes called “scanxiety.” Learn more about how to cope with this type of stress.
Managing long-term and late side effects of childhood brain stem glioma
Sometimes, side effects may linger beyond the active treatment period. These are called long-term side effects. In addition, other side effects called late effects may develop months or even years after treatment has ended. Late effects can occur almost anywhere in the body. They include physical problems, such as heart and lung problems, and second cancers, which is a new cancer that happens in someone who has had cancer before. They also include emotional problems, such as anxiety and depression, problems with memory, thinking, attention, and learning.
Based on the type of treatment your child received, the doctor will recommend what examinations and tests are needed to check for late effects. The possible late effects from specific treatments are discussed below:
Radiation therapy to the brain and spine can cause cognitive and endocrine (hormonal) symptoms over time. The severity of these late effects vary depending on the dose given and your child’s age.
The risks and possible side effects of surgery vary widely, depending on the location and features of the tumor.
The risks of chemotherapy and the chance of a second cancer strongly depend on the specific drugs used and the doses.
For each of these issues, it is important to discuss the specific aspects of the tumor and the options for treatment with the doctors that are involved in your child's care before, during, and after treatment. Follow-up care should also address your child’s quality of life, including any developmental or emotional concerns.
The Children's Oncology Group (COG) has studied the physical and psychological effects that childhood cancer survivors face. Based on these studies, COG has created recommendations for long-term follow-up care for childhood, adolescent, and young adult cancer survivors that can be found on a separate website: www.survivorshipguidelines.org.
Keeping a child’s personal health record
You are encouraged to organize and keep a personal record of your child’s medical information. The doctor will help you create this. That way, as the child enters adulthood, they have a clear, written history of the diagnosis, the treatments, and the doctor’s recommendations about the schedule for follow-up care. The American Society of Clinical Oncology (ASCO) offers forms to help keep track of the treatment your child received and develop a survivorship care plan when treatment is completed.
Some children continue to see their oncologist, while others transition back to the care of their pediatrician, primary care doctor, or another health care professional. This decision depends on several factors, including the type and grade of tumor, treatments received, side effects, health insurance rules, and your family’s personal preferences. Talk with the health care team about your child’s ongoing medical care and any concerns you have about their future health.
If a doctor who was not directly involved in your child’s treatment for brain stem glioma will lead the follow-up care, be sure to share the treatment summary and survivorship care plan forms with them and with all future health care providers. Details about the specific treatment given are very valuable to the health care professionals who will care for your child throughout their lifetime.
The next section in this guide is Survivorship. It describes how to cope with challenges in everyday life after a diagnosis of brain stem glioma. Use the menu to choose a different section to read in this guide.